Hi, Iamatthebeach. Do you have a more informal name we could call you?

I would like to be at the beach too.

The important thing is to make absolutely sure what you do have. Has the acetylcholine receptor antibody test (binding and modulating antibodies) been done lately? What about the MuSK antibody test?

There is autoimmune myasthenia gravis, which you can get at any age. Saying "congenital" myasthenia gravis sort of confuses the issue. That would simply mean that you have had autoimmune myasthenia gravis, aka MG, since birth or shortly thereafter. It might be better to say that you've had MG since birth, if that's what you have. Doctors don't say CMG. It's either MG or CMS.

Then there are the congenital myasthenic syndromes, which are mostly since birth since they are genetic diseases and not autoimmune. That's an important distinction since the treatments would be different. Some CMS's have onset at birth or in childhood but some do have adult onset. There are over one hundred mutations, so far.

http://neuromuscular.wustl.edu/synmg.html

If you have one of the congenital myasthenic syndromes, it's essential that you find out if you have too much acetylcholine or not enough. You said that Mestinon did not work for you. What happened when you took it? If you have a sodium channel CMS, then you would have too much acetylcholine.

Dr. Engel at Mayo (Rochester, MN) does not see patients anymore. I'm not sure if I would recommend them or UC Davis. Dr. Engel is listed but, again, he is not seeing new patients or at least wasn't in 2007.

http://www.mayoclinic.org/neurology-rst/doctors.html

What EMG evidence do you have? Have they done the repetitive nerve stimulation test? A single Fiber EMG?

Breathing tests are not enough to diagnose asthma. They usually do a methylcholine challenge test. I would NOT recommend you do that until you know what is going on with you!!! The drugs they give could make your condition get worse.

Getting a 2nd opinion on your breathing is a good idea. MGers often have restrictive breathing patterns, not obstructive like with COPD. COPD can involve asthma, emphysema or chronic bronchitis.

http://www.lakesidepress.com/pulmona...athe/Secth.htm

How do your symptoms fluctuate? Do you get worse the more you do? Or do you get better the more you do? I know that second question sounds weird, especially to MGers who get worse the more they do but with LEMS and some of the CMS's, a person can get better after they do some amount of activity. If you have too much acetylcholine, you "use it up more" by doing things.

You might want to write down or type your basic symptoms. When they happen or get worse, how bad they get, etc. Seeing things in writing helps a doctor. They can read faster than hear you say things!

I hope you do get answers soon. It sounds like you have been suffering since you were young. But you probably did what I did until I got worse, which is simply "adapt" to your physical shortcomings. I didn't get diagnosed until I was 42 (now 52). I've had MG my whole life.

Keep asking questions. People here are great!

Annie